Flexible Freedom

When I first met Kat Barlow, she was a breath of fresh air, mixed with a wicked sense of humor that only a fellow space traveler would understand – what am I talking about? Well, chances are if you have a child with a disability, diagnosis or difference, as Kat terms it, You are a space traveler.

I met her while Luke and I toured the facilities at The Very Special Kids hospice. We shared the stories of our sons who both had life limiting conditions. We got to know the story of her beautiful brilliant son Noah. Kat is the ultimate champion of his care and treatment.

We have been close ever since, but when you meet her, when she visits you in hospital or sends you a message, always keeping on top of what is happening for you and your little space child, it’s like the tip of the iceberg with her.
She has travelled the world and the country to get Noah cutting edge treatments, and all the while working on herself, finding a way to balance her own self-care and empowering people to live their best life.

Kat Barlow is a massively positive person who has put hours of her own time into creating courses and resources. We were chatting the other day, and she shared that she had run 153 online courses last year. That shows the massive impact she is having on the people around her and how intentional she is about doing so. Never settling.

Check out some of the stories of the lives she has impacted here.

Below, I am sharing a powerful piece that she put together, which we asked her to share at our Matthew’s funeral.
Luke and I absolutely loved this, it described a journey that we hadn’t heard so clearly anywhere else. It is a brilliant peek into this situation but also Kat’s amazing way with words and insights;

Living in Space.

If you have a child with a diagnosis, disability or difference then you will have seen the poem “Holland”
you know the one
The start goes like this…

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…… When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. But you land in Holland…. “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

It is a wonderful way to express what we go through but I felt it didn’t quite hit the mark and so I decided to rewrite it to reflect the journey for those of us with complex and palliative care kids…

So here it is..

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Except you aren’t even on a plane…as it tilts backwards ..you slowly realize you are on a rocket.

“But wait this isn’t a plane, this isn’t a trip I planned!” you exclaim ..but it’s too late.

The countdown starts are you are blasted into space.

It’s not like space is a terrible place, you have even dreamed what it’s like to be amongst the stars…but you didn’t want a go!

As you start to float, you realise it’s not like any other place on earth anymore. People are different up here.

Aliens come to visit and they speak a new language, a language of PEG, CPAP, SATs and lines. They are friendly aliens, but it can still be scary to see so many all the time, especially if you don’t always understand what they are saying.

You are not allow to panic though, everyone tells you it’s very very sad you have blasted into space…but not to worry…

You worry.
It’s hard for people to visit space.
You start to talk the new language too and people start to not understand you anymore either. The aliens become your new friends.

You see stories of people back on earth, in Italy having a wonderful time. And you say, yes I was supposed to go there too, even holland would have been ok.
But space is very hard.

There are wonderful things about space. The view out the window is breathtaking and you gain a perspective no one has ever seen. Sometimes you will be the only one in the world to have ever had that particular perspective.
But soon you realise there are other people that have been blasted into space too!
They speak the funny language and wear that space suit to project them from feeling all the things they would be feeling up there.
They all use technology to speak to each other or they meet in the space station. It’s not like going for a normal coffee…but it’s all they have. They gather and chat in their new language and the people on earth are often shocked by their dark sense of humour.
The pain of not being on earth is always there, but you start to love space too.
It has some cool stuff and the people you meet are incredible.

But we know we are not allowed to live in space forever.
It’s a very special place but eventually we will have to go back to earth.
We never know how long we have.
We never know when it will be time to go.

But the most comforting thing about space is that when a little astronaut goes out for a spacewalk..and doesn’t come back…they don’t have far to go to join the stars.

Find Kat Barlow’s incredible work at Flexible Freedom, on her website, Facebook, or Instagram.

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